Question:
I'm looking for suggestions regarding a relative, 13 year old female teenager. Recently developed fatigue. Originally thought to be due to excessive school work load, wanting to get A’s in all her classes, stress of new school, and tendency to be a "night person", i.e. going to bed late and thus losing sleep because of having to wake up early for school. Initial blood tests did show slightly lower than normal hemoglobin, and megaloblastic blood cells, but there was no sign of B12 or folate acid deficiency. Megaloblastic might be genetic, as her grandmother has it. Grandmother has fibromyalgia, maybe CFS. Grandmother's son also has fibromyalgia. Teenager stayed out of school for a week, mainly sleeping. Better, but still having major fatigue problems. Hemoglobin levels are better, but still on the low side of normal. Normal thyroid tests and a host of the standard blood tests for fatigue are normal also. Doctors don't see a problem worth treating at the present time. She doesn't take any vitamins supplements, but is about to start trying them to see if they will help (although of course the doctors didn't think it necessary). Questions: Is there any blood test worth requesting? Is CFS a possibility, and is there any lab test that would be a good indicator that CFS is present?
Can lack of sufficient sleep cause low hemoglobin? Is fatigue a common symptom of depression in teenagers? She is a very bright girl, but is reluctant to see a counselor because she doesn't feel anything is wrong with herself mentally.
Answer:
The tendency to be a "night person" is a symptom that many people with CFS have. Some doctors think it has to do with the body producing cortisol at inappropriate times. Many of us jokingly call this "Vampire Syndrome." I have had CFS for 17 years. And the first 13 years, I was on no medications. But I never got *refreshing* sleep. I tried going to bed at a decent hour like 10PM every night but that did not help. What would happen is that I would sleep for 2 hours and then be wide awake for the entire rest of the night. But if I just let my body "do it's thing," what would happen is that I would have an "energy window" that would open about 11PM through 2AM. I would feel better during those hours and could accomplish more than at any other time of the day. Then when I went to bed at 2AM, I would sleep until 7AM. So at least I was getting 5 hours of sleep as opposed to the 2 hours of sleep if I would force myself to go to bed at 10PM. Still I was never getting refreshing sleep. The "sleep mechanism" in my brain finally totally broke in 1995 and then I could not sleep at all. That's when I started on medications for sleep. I wish I had been on them for the first 13 years. Because now I get refreshing sleep. And I can use the meds to regulate when I will fall asleep and wake up. I am no longer at the mercy of my broken sleep. I guess that was a long story to let you know that sleep dysfunction is a hallmark of CFS. Some people can't sleep at all, some people sleep all the time. But whatever the case, the majority of people with CFS do not experience refreshing sleep. And I do believe the broken sleep cycle is due to some disregulation in the body, perhaps with adrenal malfunction. Does your relative ever feel *refreshed* when she wakes up? How long has this pattern of fatigue and poor sleep habits been going on for her? Did she have a bout of any viral type infection before this fatigue hit her? There is no definitive test for CFS. Diagnosis is made by first eliminating other possibilities for the fatigue and secondly by symptoms. A firm diagnosis of CFS is not given until the person has been sick with these symptoms for at least 6 months. There is a pamphlet called "Introducing CFIDS" that gives a brief overview of the disease, it's diagnosis and treatments that have helped some people. "CFIDS" is another name for CFS. It stands for "Chronic Fatigue and Immune Dysfunction Syndrome." The pamphlet I mentioned, is published by The CFIDS Association of America in North Carolina. They are one of the largest CFS organizations. If you think it would be helpful to you, I would be happy to mail you a copy. Just send me your snail mail address *privately* and not to this group because this group is available for the public to read over the Internet. I found the Great Smokies Diagnostic Lab test of 24 hour salivary cortisol, melatonin and DHEA levels to be very helpful in understanding my dysfunctional circadian rhythm. I think it's called "Adrenal Stress Profile" or something like that. It cost about $150, and is covered by some insurance. What did the results of the test reveal to you?
Did they lead to any specific treatment that has helped you? My doctor said the results indicated that I had severe adrenal exhaustion. He said you couldn't necessarily tell from just one blood plasma reading. I don't know how he could tell that exactly, but he said it's the entire pattern of the different hormones. I trust him, he's very good. To treat my adrenal problems, he put me on this program:
Adrenal Glandular Extracts, Allergy Research Group or Nutricology brand is good
Adrene Plus, a collection of herbs (I couldn't tolerate the ginseng or licorice with my endometriosis, so I now I just take bupleurum and curcumin separately)
Ginseng (I couldn't tolerate this)
Pantothenic Acid, 500 mg three times a day
Magnesium-Potassium Aspartate, 3-6 per day
Natcell Adrenal Extract every third day. (These are *very* expensive and hard to get a hold of - they have to be frozen continuously until you use them. The only place I know to get them is through my doctor.) I had the GSDL test in July, then another one in October. My adrenal glands were producing twice as much cortisol as before, and my doc said that the pattern was somewhat improved. He said it was a 25% improvement. You might want to read "Safe Uses of Cortisol" by Jeffries as well, who advocates using low dose cortisol supplementation. But artificial cortisol feeds candida and causes other problems, and my doctor says he gets equally good results using his program.
